Have you had your normal face-to-face rheumatology appointment changed to a phone call or video consultation due to the COVID-19 pandemic? We would like to hear from you.
These are strange times we are living through and one change you are likely to notice is that you will be seen less often in the rheumatology clinic and instead either have your appointment by phone or in a video consultation. We would like to hear your opinion about this change to your care as this may be an area for future research. Is the opinion of young people different from that of their parents? We need to find out. So let us know what you think by emailing us at email@example.com and we can feed your opinion/ideas into the discussions and ensure your voice is heard! Be sure and let Frances know if you wish to remain anonymous or not when you email us.
If you are interested in writing a short piece about your experience for the next newsletter or a blog on the website, even better – just let Frances know.
Upcoming Zoom Meeting
On the 30th of July, Your Rheum will be hosting our second online “face to face” meeting via zoom! The session will run from 7:00pm until around 8:15pm. We have two researchers who are looking for young people’s insight into forming research projects, so your opinion would be greatly appreciated!!
Please let us know if you will be attending by emailing us at firstname.lastname@example.org, just so that we have an idea on numbers and we will email a zoom link a little closer to the time.
Interested in research into how health professionals talk with children and young people about pain?
The latest online activity is from a researcher at the University of Manchester – DR Rebecca Lee who has requested your help in writing a list of question prompts to use in future interviews with children, young people and their parents in her study considering the communication about pain between professionals and young people and their families. All you need is to download the document, have a read and a think and send Rebecca back your comments – anything missing, another way of saying something, anything you don’t understand etc. If you would be interested in taking part, please see here! You will even got a shopping voucher to say thank you for your time – for when the shops eventually open!
What are your priorities for future research in rheumatology?
A key aim of Your Rheum is to ensure the voice of young people is heard at all stages of the research cycle, right from the decision making as to what research to do, right through to sharing and publicising the results . The national group which steers research within the paediatric and adolescent community in the UK – the Paediatric Rheumatology Clinical Studies Group – has set up a survey which we would encourage young people to complete so they hear what sort of topics YOU as young people want researched. What are the questions you want answered? So please, take a few minutes and ensure your voice is loud and clear and heard: https://www.surveymonkey.co.uk/r/NTD2X2J
Your Rheum’s First Zoom Meeting
On Friday the 29th of May, Your Rheum hosted its first online meeting via zoom. All in all it was a great success and we had over 12 participants from all over the UK!
We decided to organise this meeting, so that we could still engage young people in research and listen to their views/opinions whilst on lockdown. We talked through the current and upcoming opportunities available through Your Rheum and a bunch of external activities that young people may find useful.
One of the research team also joined us, to go into detail about their project and how exactly people could feed into developing the work.
We are currently working on trying to organize another meeting and as soon as we have decided on a date/time, an email will be sent round to members, the website will be updated and a Facebook group post will be added! If you would be interested in taking part in the next meeting, you can also email: email@example.com